EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here we are, andwhere we want to be in 2020

"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.

Transcript of "EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here we are, andwhere we want to be in 2020"

1.
Nicola Bedlington, European Patients‘ ForumCoordinator EUPATIPatient involvement inmedicines R&D:Here we are, andwhere we want to be in 2020The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composedof financial contribution from the European Unions Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

3.
Patients as partners of research:More needs to be done!Rare cancers will never be a priority unless the patients make itone. Patients themselves must therefore play a larger role indriving forward the search for therapies. They are able to seeconnections that have eluded scientists.“ „

4.
Patient advocates have a key role inbuilding new environment for R&D Patient organisations have unique insights into„real life“ and „real needs“ of patients:• Gaps  research priorities• Clinical trial design• Quality of Life measurement• Real-world access to therapies• „Value“• Patient-centered research policyTraining essential to get expertise to contribute tomedicines research & development (R&D) Research subjectInfo providerAdvisorReviewerCo-researcherDriving forcePatientPartner FP7 Project (2010),www.patientpartner-europe.eu

8.
Having a patient‘s voice inpharmaceutical policy at both Europeanand national level

9.
EPF survey on HTA agencies,decision makers and patients• Patient involvement in HTA has the most impact in puttingforward patients’ needs in terms of QoL and providing areal-life context to the use of health technologies; this isacknowledged by all• To facilitate patient involvement, HTA agencies anddecision-makers provide access to• HTA reports/guides/protocols,• easy-to-read HTA summaries• – but no training support for patients

10.
Patients want a seat at the table.Currently, there are many empty seats.This is why we haveestablished theEuropean Patients‘ Academy (EUPATI).

12.
 EUPATI platform complete with training courses,education, information material in multiplelanguages Good practice guidelines on patient involvementavailable and in use Public conferences and regional workshops willlead to an extensive expert network established. 12 National Platforms established in 12 countries Robust strategy on sustainability and politicalbuy-inEUPATI by 2017:Where we want to be.

13.
EUPATI can make the difference.creating the tipping point for patientengagement in medicines R&DIt‘s for all of us to make it happen.

14.
Get to know us!Web:www.patientsacademy.euTwitter: @eupatientsas well as: